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Posted 9/11/2008 4:11 AM (GMT 0)
Hello everyone

 I am quite new to this site.I am writing about my mom.She will be 80 in Feb.Has always been a little on the frail side but was always active now however, she can barely walk around the house she is so weak.Few months ago she got every tired and fatigued and it just wasnt going away.She went to Dr to try and get a b12 shot before she went on vacation.Dr did some tests and she has end stage liver desease and today they called and said she tested positive for lupus.Ive been researching all day and from what Ive read its usually strikes woman between 18 and 45. Im wondering if she has had it for years and didnt know it and that is why her liver is bad.My mother does not drink.I am also wondering if Lupus is heriderity, as I have 4 granddaughters that I worry about.

 I am so tired of going to specilists with my mom.All they do is talk in circles.She also has chronic anemia ,so the blood dr says its the liver causing the fatigue.The GI Dr says its the blood causing the fatigue.Now she has to go to yet another specilist about the Lupus.Is the medicine that will help her with this fatigue? Its so sad to see my once active mother slipping so fast.And I do not understand how somone can get so sick and be told they have end state liver desease how it happened so quickly.I know Im rambling on and on but I am so frustrated.If someone has any advise for me and my family I would so greatly appreciate it.

 Jo-Ann

Posted 9/11/2008 12:36 PM (GMT 0)
Hi Jo-Ann, Welcome to the forum. I'm so sorry your mom has such huge issues. Lupus really can perk along slowly or just rage all at once. It is very different for each of us . . . so its hard to answer some of your questions because this disease has so many faces. The fatigue and weakness is usually at its worst with a disease flare. *sighhhh* The fatigue usually doesn't subside w/o getting the flare under control. We do what we can to use our energy wisely at these times. For normal people, exercise will give them energy. When our lupus is flaring, we measure every single movement in a day to get the most out of our limited energy. Even normal grooming or bathing will zap her energy fast. But if she paces herself, alternating between rest and things she needs to do, she'll get the most out of her day. Depending on how fatigued and weak she is, her day might be: Rest 20 minutes, take a shower. Rest 20 minutes make breakfast. Rest 20 minutes do b'fst dishes. Rest 20 minutes, put in a load of laundry. Rest 30 minutes, put clothes in dryer. Rest 40 minutes, fold clothes. Rest 20 minutes, make lunch and eat. Rest 20 minutes, clean up the lunch dishes. Rest 20 minutes, make sure dinner items are out of the freezer. Rest 20 minutes, spend 5 minutes starting to prep dinner. Rest 20 minutes spend another few minutes starting dinner prep . . . etc. So she needs to figure out her best cadence for her energy level. That may be 5 minutes activity for each 30 minutes . . . . or she may be WAY more limited or somewhat better off. She'll need to find her own grove each day. This really can change quite a bit from day to day. But during a flare it can be quite miserably low. Lupus 'can' be hereditary . . . but still in low enough number that you don't want to panic about the kids. You've got enough dealing with mom and there is no preventative medicine. There are some links at the end of my signature that you might find helpful for initial info. I hope you find some of it helpful. Blessings!
Posted 9/11/2008 5:18 PM (GMT 0)
Thank You so much for getting  back to me.Any info I can get is helpful.

 God Bless You

Posted 9/11/2008 7:22 PM (GMT 0)
Thanks . . . . that means a lot to me!!
Posted 9/11/2008 7:33 PM (GMT 0)
Jo-Ann, I am so sorry to hear about your mother. I can certainly understand how going to these specialists can be frustrating because each doc only seems to want to take care of their piece of the puzzle instead of looking at the whole picture. Has any doc mentioned that lupus might have cuased the liver failure? Lupus can attack any organ in the body and there is a type of lupus that attacks the liver. Also, it can be common for people with lupus to have anemia. Hopefully she will see a really good rheumatologist for her lupus and he/she can get your mom started on a combination of meds that will help give her back some quality of life. I really hope that the docs can find something to help improve your mother's quality of life. I hope they work hard for her and that they don't let things slide because she is 80. My mom is in her 70's and healthy and active, but I think sometimes when she goes to the doctor with symptoms, they brush her off because of her age. Please ask any other questions you have and I hope you'll keep us updated on how your mom is doing and what you find out from the lupus specialist. Take care
Posted 9/12/2008 3:56 AM (GMT 0)
Rosie you seem to be the perfect person that knows alot about Lupus...thanks for taking the time to talk to someone even though you don't even know them. I haven't had Lupus for very long but Ihave also learned alot from some of the responses that you give to different advice to different people. thank you very much I will have alot of question in the future and I know that I will be asking you thanks
Posted 9/12/2008 1:02 PM (GMT 0)
* blush * Thanks Alexsal !!! I learned a LOT right here from the fantastic folks that helped me when I was rather flailing to tread water. I'll be ever grateful for the help and kindness I received here. You are SO welcome!! Blessings!
Posted 9/12/2008 1:36 PM (GMT 0)

100th monkey effect?

That may be 5 minutes activity for each 30 minutes . . . . or she may be WAY more limited or somewhat better off.

I can't believe that I came up with this on my own.  the same things that you have said.  the only thing I could do when I couldn't walk, set up for long periods, was watch TV.  I timed my  "to do things time," with the commercials on tv.  rest while the program is on, work five minutes while commercial is on. 

Must be the 100th monkey effect;)

Thanks for sending this post.

Hester

Posted 9/13/2008 1:12 AM (GMT 0)
Your welcome Hester, It is exactly what I do. I did another post on feeling "empowered" and doing what little I am able to do really empowers me. I won't allow my family to do those things that I am still capable of doing. Have had a few arguments about it . . . but . . . if I can do 5 minutes . . . than I'll darn well do my 5 minutes. It actually adds up over a day. And . . . you nailed it. If you can only do 2 minutes per hour, than for heaven's sake do it. But if you can do nothing but ly in bed and wait for help. . . . than that's all you can do . . . and that's ok!! Blessings!
Posted 9/13/2008 11:40 AM (GMT 0)
And . . . you nailed it. If you can only do 2 minutes per hour, than for heaven's sake do it. But if you can do nothing but ly in bed and wait for help. . . . than that's all you can do . . . and that's ok!!

This is such good advice.  I think I will write a note with these words on it, and put it on my refrigerator, and tell myself in the note that you said so.  smilewinkgrin   I can give this advice to other people, but find it so hard to accept it for myself.  When I was working, I always was able to go to work even if I was sick.  but this sickness is different than regular sickness.

this  is good days for me, since starting plaquenil this time.  I don't have to hold onto furniture to get myself to the kitchen.  but I still can't do much without causing pain.  but compared to April  through July of this year, I am in good days.

I think we help each other by telling each other that it is ok.  and a little at a time maybe we give our own selves permission to do nothing but lay on the bed or couch if this is all we can do.  I wish I had found this forum in 1998.  but I didn't even have a computer at the time.

Hester

Posted 9/13/2008 12:24 PM (GMT 0)
(((((((( Hester ))))))))) Glad you found us!!
Posted 9/13/2008 2:19 PM (GMT 0)
Jo-Ann, I'm glad you found this forum, but am sorry that you and your mom are going through such a tough time. I hope your mother can get in to see a rheumatologist soon. That's a doctor who specializes in diseases like lupus. Hopefully they will put your mom on meds that will help her feel better and that will give her a little more energy. Good luck and come back here any time and all the time with questions and frustrations. That's what we're here for.

Hang in there.

Pat
Posted 9/13/2008 2:36 PM (GMT 0)
JoAnn,

Lupus is not hereditary but there is a tendency for auto immune diseases to run in families.  We inherit a set of genes that predisposes our immune system to disruption.  IF something triggers a response we get a disease but not necessarily the same as our parents had.

Lupus can "lurk" in your body for years and you can be virtually asymptomatic.  Lupus can hit anyone at almost any age even an old guy like me.  I believe that my disease was lurking for at least 15 years...I had low platelets and mild anemia but NO other symptoms until 3 years ago.  Some researchers believe that an initial trigger starts the disease but you can be asymptomatic for years until another trigger pushes your immune system over the brink.  Lupus is not like a disease with a specific cause and treatment.  Same for other AI diseases.

It is possible that lupus caused you mothers liver problems but she might have another cause for it. 

It sounds like your mother is in diagnosis hell which so many of us have experienced the same thing.  It is important to find a rheumy who is really experienced treating lupus and coordinate with your other specialists.

AS for fatigue, that is a hallmark symptom of lupus and other AI diseases. There is no pill to cure that...and probably no supplements to make it go away.  When the disease is controlled usually fatigue is less of a problem.

Sorry you have these problems.

Bill

Posted 9/13/2008 11:06 PM (GMT 0)
You are so very well informed Bill, I hope someday to be as informed as you are.    I never saw the purpose for knowing so much about it, or maybe it was my own desire to deny the disease.  but I never had a flare like this last one that started in April.

Joann I admire you for taking such good care of your mother.

hester

Posted 9/14/2008 11:52 PM (GMT 0)
This is my first entry. I pray that I have found an area where I can get some answers. Like baroni above, my mother has been diagnosed with Lupus (Dermamyotocis) I know that is not spelled correctly. She was a VERY active 73 year old and everything suddenly changed. Started with the leg pain, horrible rash, more muscle pain, weight loss. Went on high doses of prednisone for long periods. She is a shell of her former self. I am sick with worry. She probably weighed 168 when she was diagnosed about 3 years ago and this wseekend, she weighed in at 120. So frail and weak looking. My question right now is this......she has been having lots of trouble this past year loosing short term memory. Dr says not to worry ???? They said it was not altzhimers (sp). She was always a little obsessive compulsive and we thought maybe adult ADHD. Doc says no way. They will do a head scan this week. Does this form of lupus have any connection with this kind of memory issues? thanks for any help. I am jsut learning
Posted 9/15/2008 1:32 AM (GMT 0)

Hello her daughter,

I am not as knowledgeable as some others, but I can tell you that I too have my short term memory messed up.  people here call it brain fog.  I was afraid that I had the beginning stages of alzheimer.  But then I found this forum, and found out many others here have this same symptom.  Some people here are much worse off than I am, due to Lupus affecting the brain.

Someone else will come on later and probably give you better advice than I can.

Thank you for taking such good care of your mother.

Hester

Posted 9/15/2008 2:04 AM (GMT 0)
Welcome to the forum Her Daughter!! You should really start a new topic and include "memory loss" in the title. You'll get more responses that way and people will pop in and say hello to you. They won't see your post here. Lupus "can" cause inflammation to the brain which can cause memory loss. But the doctor should be able to distinguish between this and alz. The memory loss is different. People with alz will forget how to do things they've done well for years. My dad couldn't figure out what to do with a three prong plug in an outlet that had only two holes. That was a real red flag for Alz. We lupans lose words and take longer to get out our thoughts. We call it "brain fog". We can do it . . . it just takes us a while longer. Glad you found us!! Blessings!
Posted 9/16/2008 12:27 AM (GMT 0)
Oh thank you for your replies. I am new to this and it has taken me forever to find this site and your replies. I will now try to start a new topic entitled Memory Loss and hope to get some other information. My mom is scared to death that this is a permanent thing and that it might get worse. I can tell she gets stressed when she asks the same question after only a few minutes of the first time. I hope to be able to get more information on Dermamyositis to share with my two sisters. Bless you all.
Posted 9/16/2008 3:08 AM (GMT 0)
The disease is dermatomyosits and is an idiopathic inflammatory muscle disease.  Symptoms are usually pronounced, symmetrical proximal (muscles off the hip and shoulder girdles) muscle weakness and also distinctinve skin rashes.  DM is one of 3 myositis diseases and is often accompanyed by lupus or other AI diseases.

If pronounced muscle weakness, fatigue and skin rashes are not present then it is probably not dm.  Like lupus it is not always easy to diagnose.

Here is a link on dm.

http://www.emedicine.com/med/topic2608.htm

I have polymyositis and am familiar with both pm and dm.

Bill

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