View Full Version : Things are going worse every day...

01-15-2009, 12:32 AM
Hi all.

I am here for my best friend cause I am trying to help her. She was diagnosed with lupus 8 months ago and she is not doing well at all.

She had symptoms for 6 months before her diagnosis.
Her main symptoms were extreme fatigue, extreme mood swings, excessive loss of weight, no appetite and memory gaps/concentration problems.

Now, 8 months after her diagnosis, not only she is not better but she is worse and doctors don't seem to care.

Here is a list of what is going on now:
1) She remembers nothing. I mean nothing. I was analyzing a movie to her, and 30 minute later she was asking me EXACTLY the same questions, and she told me she had never heard of that movie and If I could talk to her about it. And this is happening ALL the time.
2) She has no appetite at all. She only drinks coffee and smokes all the time. She is living with one slice of bread or some cheese or something like that.
3) She can't sleep at night cause her legs are doing something like spasms - they keep moving without her wanting to.
4) She is in a total apathy. She doesn't worry about her health, she is laughing when we are talking serious and she is not reacting to anything. If you hit her she will look at you and just move a little bit so you can't hit her again.....
5) She can't talk any more. She looks like she is in another planet, can't communicate, can't discuss anything. Her words don't make sense. She has no opinion about anything.
6) She is totally out of energy. She is like 100 years old (she is only 30). I left her on the bus station, and looked back to see if she was ok, and the position of her body was the same as an old lady's who is barely standing.

I told her to visit the doctor, I told her to find a supporting forum, I also told her to stop eating gluten cause I've read that there may be a connection, and she is just saying "Oh ok. If I remember it I'll do it".

It is not normal. She is sleeping in a sitting position for the past 10-12 months cause her legs are doing these uncontrolable moves and she is not worried about it. She told that thing about her legs to her doctor, He told her to take some pills for her neuro system, the pills didn't work, and she stopped there.

Sorry for my long post and for any grammar /spelling mistakes.

I would appreciate any info.


01-15-2009, 01:44 AM
First off, welcome to the forum and let me say that you are an amazing friend :!: She is very lucky that she has someone who wants to learn about the disease in order to understand what she is going through and to help in any way. Lupus is a very odd disease and will cause different symptoms in everyone. I do not know what to say about your friend.What are the medications she is taking? Does the doctor believe this is all due to the illness or is she having some emotional issues too? I know you mentioned she is not sleeping well and that can big a big trigger for all the other issues. Any type of stress could also cause the symptoms to become worse than they already are. There are a lot of people on the forum who are very educated and will be able to help you more. Give them time and they will pop on here soon enough :wink: Keep doing what you are doing and post as often as you want with all the questions you have :angel:

01-15-2009, 10:13 AM
It sounds as if your friend is in a very bad state of depression as well as having serious health complications. While we are not doctors here, I can say that it does sound like she is suffering from some type of auto-immune disorder, anywhere for Lupus, to MS, to diabetes and more.

Many of us have the "Brain Fog" which we joke about sometimes. But, this symptom can be a serious complication and can mean that the central nervous system has been damaged by the disease process (whichever disease it may be).

The issues in her legs could be "Restless Leg Syndrome", this occurs a lot in people with diabetes. Has her blood sugar ever been tested?

The debilitating fatigue is also a common symptom of many auto-immune disorders.

It is imperative that your friend find a good rheumatologist who can run the appropriate tests in order to ascertain exactly what is going on with her. Also, she should make an effort to get help for her emotional state because doctors cannot heal one without getting the other in a manageable state.

Please let us know if there is anything that we can do to help you help your friend. She is very lucky to have you and I want to commend you for being so devoted to her. I wish there were more people in the world like you!

Peace and Blessings

01-15-2009, 04:37 PM
Thank you both for your supporting words. I am sure you would do exactly the same for your best friend....

Danica, I don't know what medicines she is taking right now. I will ask her, but I have to do it in a way that she won't suspect me....

Saysusie I think that the mental / emotional issues you are reffering to are a possibility. And a strong one....

The problem is that she will not admit that she has a problem....That is bad....

Her blodd sugar is ok. She has been chegking it for 3-4 months because at the beginning she was taking a strong medicine that would increase her blood sugar (kortizone-spelling?) so she was cheching it daily.

The doctors that are treating her are so ignorants. They keep on saying she is perfect. But they didn't know her to tell the difference + I don't trust them. My docs almost killed me. Twice.

I was wondering if gluten could damage. I will start searching and googling to see the connection of gluten - lupus. I know that there is.

Right now I don't think that there are much that you can do, exept to give me ideas for searching. Saysusie you told me about diabetes, I will look it up even though her blood sugar is ok.

The best I have to do is to collect some ideas about what could be the reason, and learn as much as I can.

After all, learning did make us healthier. all.

Going to sleep now. THank you so much.
The best in health.


01-15-2009, 05:16 PM
Hi Marisa

You are a very good friend to have.

Your friends diet could be making alot of her problems worse.

It's hard to think clearly and remember things when your diet is so poor and you are not getting enough rest.

That would make the lupus fog even worse.

Can the doctors not see just by looking at her that her diet is not what it should be?

There is a simple prayer that I would like you to keep close to your heart.

God, grant me the serenity to accept the things I can not change.

The courage to change the things I can

And the wisdom to know the difference.

Your friend needs you more than she may understand.

Please remember while you are doing your best to help her, she needs to want to help herself as well.

I'm glad you found this site. :) we will be hear to listen and support you.