How Can I Deel With Lupus?

[Katina]

My name is Katina. I was diagnosed with lupus about a year and a half ago. I have been going to a doctor in Atlanta. He has helped me alot. But, there are days that I don't think I can make it. If I am not feeling so tired that I can barely get up in the mornings, I am so sick to my stomach that I can barely eat. I am so sick and tired of being sick and tired. I am also tired of my doctor saying you need to watch what you eat. Because you are gaining to much weight. I tell him that I barely eat anything and I exercise everyday. Like most of you I take Prednisone. How can you lose weight taking this medication? I try to do the things that I used to do like painting but, I can't and it makes me so mad. Half of the time I'am in tears about one thing or another. It seems like no one around me understands the way I feel. I was so lucky to happen upon this site. Thank you for listening. May God Bless each one of you. Katina :flowers:

[helloos]

Katina, sorry to hear that you are feeling that bad, I guess this is one of your bad days. I haven't been diagnosed yet so I can't say I know how you feel, but I can say that it is very discouraging not feeling well and not being able to anything about it. I am in the process of diagnosing something that is going on with me, and I feel horrible as well. I am very outgoing, work, go to gym, now I haven't even gone the gym, am not as outgoing, but still work. Sometimes by the end of the day, I have chills,low grade fever, pain all over and feel like I have the flu. Feeling bad brings you down. I can only say keep up the faith and don't give in. A fight is a fight, and no matter how bad you feel, you are not alone. I hope you feel better in the morning. Another day may bring some difference.

[runningteach]

Hi Katina! Sorry to hear you are down. I can totally relate because that is the way I feel right now. Things will get better. try to do something you like to do even if it is for a little while. I think that might help lift your spirits.

I'm on prednisone and it is rough trying to keep the weight off. I would just worry about getting better right now. Once your feeling better, than worry about the weight. I hope you feel better soon.
Jeannie

[AnM]

Katina, Hey & Welcome to the site!

I understand being tired so much, n sick n tied of being sick n tired. I would suggest maybe going to a therapist- Social worker, psych. It can only greatly help. there are 1's that deal w/ people who have chronic illnesses.
A lot of us see them, as dealing w/ a chronic illness is hard, and it helps to unload, and maybe figure some good coping skills.

As well as, that Lupus can cause depression, the illness itself; & living w/ a chronic illness can cause depression. Also, u can discuss w/ them about possibly going on an anti-depressant. They are not only to help w/ depression also, they can help w/ sleeping, and pain, etc.

Being on Pred. n losing weight is hard. What I can say is just don't buy any junk, that way, "out of sight out of mind". :rolleyes: U can get some different healthy snacks, whatever u like- salad, carrots- those mini 1's are good, cause they are pre-washed, n u can just grap n snack on em. A healthy diet basically. But, sometimes, not much u can still gain some weight.

Also, to let u know, u should try n eat a few times a day. Not eating can also change the way your body is disperssing things, ie. the fat, and thus u can gain some weight.
I know it's hard when u don't feel hungry to eat, or u don't feel well n u can't eat. but, we do have to push ourselves to get the nutrients n food in our body.

I was also wondering what other meds. u are on? n what dose of Pred.?

There are meds. for Lupus that can help w/ the disease itself, and the symptoms such as the fatigue. Also, when the Pred. is reduced to a low dose/off then the weight can go down.

Take care, n keep posting,
Alicia :coffee: :flowers:

[Clare.T]

Welcome to the forum Katina !

Unless you were having a one off bad day, it sounds as if the disease isn't under sufficient control yet. Lupus does come and go so it's a question of judging the pattern of bad days.

We often find it hard to admit when we have no special complaint about the doctor. We are reluctant to complain and resort to consoling ourselevs how much worse off we could be when the real question is how better could we be feeling.

We often don't know what improvement we can reasonably expect.
And we need to know about how lupus is affecting us and to inform ourseleves what medical options might be available. We also need to know what tests have been done and how often they are repeated to check for improvement and changes.

As general comments - these days every effort is made to use as little Prednisone for as short a time as possible. There are the steroid sparing medications Imuran and methotrexate. There's the base medication for lupus, Plaquenil and another sort of anti malarial, Quinacrine. These two work can be extremely effective together and reduce the need for other drugs of any sort.

Other conditions can also cause similar symptoms - anemias, thryoid disease and depressions.

The stomach problems certainly need fully investigating !

It's a fact that when we are most ill we need to summon all our strength to get proactive aggressive treatment.

I am sure you get lots of encouragement from us all and we'll do all we can to help.

Bye for now
Clare

[Katina]

I just want to thank all of you for the kind and helpful words. It is hard for my family to understand how I am feeling sometimes. It helps alot when there are people who really know how I feel. Thank you all and may God Bless each one of you. Katina :cloud9:

[belladonna]

Originally posted by Katina@May 19 2005, 07:52 PM
I try to do the things that I used to do like painting but, I can't and it makes me so mad. Half of the time I'am in tears about one thing or another.
Dear Katina.... Painting has always been a big part of my life too. (See the link to my website if you like. It's posted in 'my info'.) I couldn't hold a brush for most of this past winter cause of joint pain and simple fatigue... I know just how you feel. :hugbetter:

[Tom]

Katina, :hugbetter:

I know how hard it is, especially the pain part. I fought long an hard avoiding pain pills in fear of addiction. I came to realize that if I do get addicted to them, I'm still way better off then being without them. That's what they are for anyway, relief. It is definatly a search for finding the right meds that work best for you. Like a lot of us, it takes time and patience before we find the right combination. Learn to be patient with yourself, it's not your fault. I hope you can get back to painting very soon, I only wish I had the talent.

Belladonna, your paintings are amaizing! I hope the same for you as well so that you can continue your wonderful work.

[belladonna]

Originally posted by Tom@May 24 2005, 04:03 PM
Belladonna, your paintings are amaizing! I hope the same for you as well so that you can continue your wonderful work.
Thank you Tom. :wiggle: