View Full Version : Wife was just diagnosed with Lupus

04-27-2011, 07:02 AM
I'm Kevin
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.

04-27-2011, 07:14 AM
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.

04-27-2011, 07:28 AM
Hello Kevin,

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.

Terri x

04-27-2011, 08:03 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:

•difficulty sleeping
•irritable bowel syndrome (IBS)
•muscle stiffness
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.

04-27-2011, 08:43 AM
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!

04-27-2011, 01:25 PM
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????
Thanks again

04-27-2011, 01:53 PM
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

04-27-2011, 02:03 PM
Thank you so much, http://a4.sphotos.ak.fbcdn.net/hphotos-ak-snc6/216988_1697430511296_1103856200_31404305_528268_n. jpg, Here's a pic of her Recently when we were at the hospital for my Daughter giving birth. She's my sweety

04-27-2011, 02:59 PM
Hi Kevin,

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.

04-27-2011, 06:14 PM
Thank you so much, http://a4.sphotos.ak.fbcdn.net/hphotos-ak-snc6/216988_1697430511296_1103856200_31404305_528268_n. jpg, Here's a pic of her Recently when we were at the hospital for my Daughter giving birth. She's my sweety

She is BEAUTIFUL! Thank you for sharing that!

04-27-2011, 09:11 PM
hi kevin, i am 50 this year, noona just turned 63. a few of us are getting close to your years.

i to have fibro and lupus.
when the medication is sorted out, life can become easier.
when my lupus is out of control, i sleep lots more sometimes 20 hours a day.
unfortunatelly there is no cure for the 3 auto immune disorders your wife has.
many of us have multiple, and they are usually interrelated.
this can make it harder to control, but when they are in balance, life can be enjoyable.

i hope the rhuemy can see your wife soon.
wishing you both the best.

04-27-2011, 09:19 PM
Hi David,
Welcome to WHL. Your sweetie is a lovely lady and you are a wonderful husband for being so concerned and involved.
I have several overlapping AI diseases. I'm 53 and my hubby is 54. My illness has changed our lives, but it has given us some new opportunities, too.
I had to leave a teaching job that I loved, but the AF offered to send Jeff to The Naval Postgraduate School for his PHD. All five of our kids are grown, so we were free to pack up and move from TX to CA. I'm able to be home and resting a lot more now, but I'm still involved in life. I'm the Vice President of The Officers' Spouses" Club this year.
We still love to travel, too. In the last few years, we've been to Hawaii, Japan and Greece. I take care to take my meds with me, use plenty of sunscreen, rest when I need to, and I travel with my cane and wheelchair. (I was lifted to the top of the Acropolis in my wheelchair!) We're planning to go to Australia in a couple of years and eventually we'll get to Italy. I'm probably one of the more adventurous people that you will find here. I hurt a lot, and I move slowly, but I refuse to stop doing the things that I like to do.
It sounds like you and your wife are lots like us, so I'm here to tell you that you will learn to deal with it.
Everyone has given you some good information. Plaquenil is often the first drug that the docs try. It has worked well for me. I also take a weekly injection of Methotrexate. It slows me down for a day, but I'm usually good to go for the rest of the week.
Good luck to both of you, and I hope that we can help you.
BTW - Congrats, Grandpa! We have three grandsons, and they are the best!

04-29-2011, 01:07 AM
Hi Kevinhog;
You have provided two of the most important things to your wife that we Lupus sufferers need.........Understanding and Support. Both you and your wife are so lucky to have one another and the love that you share comes through in your posts.
You have bee given some very good information and advice by other members of our family here. There is not much more that I can add, other than to let you know that we are here to help you and your beautiful wife in any way that we can. I am so glad that you both are here and welcome to our family :-)

Peace and Blessings

04-30-2011, 03:47 AM
Hi Kevin,

Hows your wife been feeling since you joined?? i wish you both a nice weekend and your wife less pain free days.

Terri x

04-30-2011, 11:48 AM
Hello Kevin,

I'm a little late getting to this thread, but I wanted to stop in anyway and say welcome to our group!


05-01-2011, 12:38 AM
Hi Kevin,

Hows your wife been feeling since you joined?? i wish you both a nice weekend and your wife less pain free days.

Terri x

Well, she's slept an awful lot and today she not only ran out of her Vicaden, but mine as well. I'm off work for a back injury awaiting approval for spinal injections, so I have a prescription for Vicaden. I think she uses entirely too much vicaden and now that she's out she is going to get desperate. Is it possible to have this disease without an addiction to painkillers??? How much of her problems could be as a result of the vicoden??? I guess we'll know more when she sees her Arthritis Doc, thanks for asking.

Linda From Australia
05-01-2011, 03:35 AM
When does she see her doctor, and are you able to go with her just to give the doctor your point of view about the difficulties your wife is facing?

05-01-2011, 06:58 AM
I agree with Linda. You need to go with her to the doctor. You need to be her advocate on all things, and that includes helping find the kind of meds that will take away the pain without the addiction issues. There are pain meds that can do that but, even better, there are meds that will actually work to lower the amount of pain so that the pills are not needed. She will need someone there to go to bat for her though. Don't let them dismiss her even though they may try. Don't let them look at her like she is a drugged out female that just wants the meds. Don't let them ignore her problems. If you do that then you can help them to REALLY help her and not just cover the problems with pain meds.

She is lucky to have a husband like you

05-01-2011, 12:04 PM
We are awaiting the referral for her Arthritis Doc so no date yet. One of the biggest issues we have and we have gone rounds and rounds over it is her Vicoden use. She is constantly using more than prescribed and I am concerned about addiction, and confusing symptoms with addictive cravings. I have a thorough understanding of addictive behavior and she does not, but she can only see my misgivings as complaints and being judgmental, as any addict would. It's all justifiers because she is in denial about her drug use. She has also picked up smoking again after five years, she says it helps but I really resent the hell out of it. That is difficult to get around and I know it's very destructive to any relationship, so I am stuck between resentment and acceptance. This is a difficult time for sure, I am sleeping more as well but I know it's because I'm a little depressed, I should be, this is life changing stuff and financially we will be forced into bankruptcy and many plans that have been made are not going to come to fruition. There already money stressors because she was making twice the money and lost her job, I think because she was late all the time due to oversleeping her alarm, now she cannot return to work for sure because we can make no plans that involve her being anywhere at any time. This is completely unlike the person I married, we used to fight because I didn't plan things the way she liked, she is highly organized. At this point I'm afraid neither of us can see much of a light at the end or the Lupus tunnel. From what research I can glean from the web it looks like this is going to be spiral to hell for both of us.
I think I need to plan to move close to my kids about 250 miles away, but there is no way I can leave my job with the school district because of my medical benefits so I don't know how to get there from here. I haven't even had a chance to talk to my kids yet to tell them the extent of her illness, my Son will understand because he is a Fireman and a Paramedic but my daughter has already told me she thinks it's all about the drugs when we told her it was fibro, maybe she'll come around when she finds out it's Lupus. So, as I'm sure you all know, this sucks and it's only the beginning. Thanks for the compliment Mari, some times here lately I don't feel so much the good husband, I feel selfish, I don't want our lives to take this turn but there is nothing I can do but roll with the punches and keep putting one foot in front of the other....it will all work itself out some how, it always does don't it?

05-02-2011, 10:26 AM
Kevin; Please do not doubt yourself as a good, caring husband. If you were not both of these things, you would not get upset about her abuse of Vicodin or her return to smoking.
Know that, being a good husband may also mean applying a little "Tough Love" for sake of your wife's health. I, recently, had to finally use "Tough Love" on my mother who was (like your wife) abusing her vicodin while also abusing alcohol. Every time that she would have a problem, a slip and fall, or any mishap..she wanted to blame on her lack of vicodin, her other medications..but never her excessive alcohol consumption or her abuse of vicodin. Finally, after a slip and fall, she was taken to the emergency room at which time, the doctor smelled the alcohol on her and could tell (by her chart) that she was using too much vicodin. The doctor gave her a choice; give up the alcohol or the vicodin or she was going to die. After hearing this, I basically told her that if she did not give up both, she was going to lose me. She, in her usual way, chose to lose me because she continued to drink and use the vicodin. I am not sure if her decision has or will change because I have had very little contact with her since that conversation. One thing that I told her, that I thought it was important for her to know is that..her alcohol use and vicodin addiction may feel like it is helping her, but it was killing me. She never considered what her actions were doing to the people around her, she only thought about how it made her feel and that was selfish. She needed to know that her actions were destroying me both emotionally and physically. So, she is not in this world in a bubble, it is as if she is in a lake and that everything she does has a rippling effect on everything and everyone around her!
It would seem to me that your wife's doctors would know that she is using her vicodin too quickly and too often. I agree with what the other members have said: accompany her to her next appointment - make sure that you let her doctors know that she is abusing her vicodin as well as yours, that she has returned to smoking and that you are truly concerned for, not only her health, but on how her actions are affecting the family dynamics and, in particular, how her actions are affecting YOUR health!
As has been mentioned by others, there are other pain medications that can be prescribed that are not as addictive as Vicodin (that do not contain codeine). Ask about other options while she is with you at her appointment. It is important that her doctors know everything and that your doctors know everything, in order for them to provide the best treatments for you and for her.

I wish you the very best
Peace and Blessings

05-07-2011, 08:09 AM
Well, she's slept an awful lot and today she not only ran out of her Vicaden, but mine as well. I'm off work for a back injury awaiting approval for spinal injections, so I have a prescription for Vicaden. I think she uses entirely too much vicaden and now that she's out she is going to get desperate. Is it possible to have this disease without an addiction to painkillers??? How much of her problems could be as a result of the vicoden??? I guess we'll know more when she sees her Arthritis Doc, thanks for asking.Hi Kevin,

I can understand you needing the drug because of your back but it's not helping your wife, she does need to see a specialist because besides her symptoms Vicaden (Vicodin) will also add to her problems being a visical addiction because the addiction to the drug is terrible to come off.

I'm adding below what the addiction can do, so try your hardest to see a specialist. Terri x

How long will the withdrawal from painkillers last? Whether it’s withdrawal from Oxycontin, Vicodin, Percodan, Codiene or any other painkiller or heroin, that’s kind of a loaded question.

The main physical withdrawal effects, such as the pain, sweats, chills, vomiting, diarrhea and nausea usually last only about 5 days to a week. The other part, the longer term withdrawal or PAWS (post acute withdrawal syndrome) can last from several weeks to several years.

This part is sometimes what keeps people going back to the drug. After the initial withdrawal or detox, then you have residual detox and the brain trying to function normally, but it just can’t. At least not yet, and it can take months or years for a persons brain chemistry to get back to normal.

It is this period of time that can be the most difficultfor many to STAY OFF of the drugs, because it is here where the nagging and gnawing little voices start talking. I am not talking hallucinations, but I am talking depression and anxiety and the want to just be happy again.

What happens when a person is addicted to pain killers is their brain stops making endorphins, the bodys natural pain killers and the thing that keeps us from getting depressed. When a person starts taking pain meds for an extended length of time, their brain stops making endorphins because opiates look just like endorphins to the brain and the brain stops making them.

After so long the brain stops making them and the pain killer is now depended upon for endorphins or the imitation endorphins. Clinically the opiate dependance is spelled out like this:

“Opiate addiction is recognized as a central nervous system disorder caused by continuous opiate use. Extended opiate abuse leads to the nerve cells in the brain to stop functioning as they normally would and stop producing natural endorphins. Because the body is receiving opiates and is no longer producing endorphins, the nerve cells start to degenerate and cause an opiate addiction.”

So what happens is the brain doesn’t make endorphins anymore, the person who was addicted may be depressed and have anxiety for a period of time after getting off the painkillers and after the physical withdrawal is over.

05-09-2011, 12:52 PM
Hello Kevin,

Hows your wife keeping and as she needed the Vicaden so much plus i do hope your backs abit better.

Terri x

05-09-2011, 01:15 PM
She is actually having surgery for a foot problem tomorrow and has had a pretty good last couple of days. She still is sleeping 10 to 18 hours a day and she has run out of Vicoden and seems to be doing better tha n I expected, I may have been a bit hasty in my speculation. My back is pretty good as long as I don't try to do anything stupid, I'm going in for spinal injections tomorrow so we will see how I am after that. Thanks for your concern.

05-09-2011, 02:13 PM
Thanks for the update! I will keep my fingers crossed!

05-09-2011, 02:53 PM
She is actually having surgery for a foot problem tomorrow and has had a pretty good last couple of days. She still is sleeping 10 to 18 hours a day and she has run out of Vicoden and seems to be doing better tha n I expected, I may have been a bit hasty in my speculation. My back is pretty good as long as I don't try to do anything stupid, I'm going in for spinal injections tomorrow so we will see how I am after that. Thanks for your concern.Hello Kevin,

Thanks for letting we know mate and all my best wishes to your wife concerning her op and i hope she recovers well and she's done well with the vicoden but being concerned is a nice thing plus being worried about her in general.

Well i hope the spinal injection's work and i wish you both all the very best & in health. xxx

05-09-2011, 05:26 PM
I use pain killers, I use to take the ones your talking about. I refuse to take them becouse I didn't want to be addicted to them. With my painkillers now its 750MG twice a day, muscle relaxer 800 MG three times a day. Plus my Lupus med, I take the other two when I need them. I refuse to listen to my doctor only becouse I am taken over 4,000 MG a day. Too much I think, The advise you have got here is the best advise. Try to get off of those, if you can.

05-11-2011, 12:43 PM
Hi Kevin,

You may not be able to get on the site, due to your wife having her operation and i hope that went successful and also the injection as eased your back for you.

Thinking of you both xxx