View Full Version : I'm another victim to Lupus

03-22-2007, 10:23 AM
It's been a long time coming, but finally got a diagnosis of Lupus who finally took my case seriously. On the day I went to the rheumatologist, I looked and felt awful, I was swollen and achy and cranky :evil: , s I guess he too one look at me and took it seriously.

03-22-2007, 12:26 PM
Hi Sweet*T!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D

Keep well! :)

03-22-2007, 05:32 PM
Welcome! I know how much a diagnosis can help on the road to moving forward living with this disease.

I wish you luck and good health!

03-28-2007, 02:34 PM
It is good to finally have a diagnosis, but I still do not feel good. I take many medications to treat different symptoms, but the newest is Plaquenil which makes me feel worse at times.
I have read some of the letters on the forum here and am curious about how Lupus affects the scalp. I know that Lupus affects everyone differently but the scalp issue interests me.
Does anyone ever feel really good again? I have read on the forum that stress is a factor of Lupus making things worse, but I asked my MD if stress was bad for Lupus and he didn't think it did. I live under a tremendous amount of stress with a sick husband (HD) and sister in law, who suffers with the same disease (HD). I am on effexor xr, is there anything that works better than effexor?
Pardon my rambling, I am not feeling good today at all, I am sitting at my computer at work watching the clock, praying for 5 to hurry up.

03-29-2007, 01:50 PM
Hi Sweet T :lol:
Welcome to our family. First, let me talk a little bit about stress. Stress is defined as human reactions to forces that tend to disturb our normal functional (physiologic) balance (equilibrium). Stress refers to any adverse condition or state that affects our normal well-being. Such stress can be imposed on us by our jobs, our spouse, other people, ourselves, or by setting our daily schedule too rigorously. Doctors dealing with auto-immune diseases seem to agree that stress directly contributes to autoimmune disease development and triggers flares. At a cellular level, stress directly affects immune, nervous, and endocrine cells, causing the production of autoantibodies, immune complexes, and pro-inflammatory cytokines. Psychoneuroimmunology (PNI) is the scientific study of the interrelationship between the immune, endocrine, and nervous systems. Whatever affects one system trickles down to the others as the three systems work together to maintain health (homeostasis). The nervous system and endocrine system cells are collectively known as neuroendocrine cells, their organs neuroendocrine organs. Neuroendocrine transmitters respond to physical and psychological stress, including the stress generated by stimulants and refined sugars. In response, these neurotransmitters send signals to the immune system so it too can respond. Over time, the immune system weakens. The weakened, ineffective immune system cells respond to chronic stress by unleashing pro-inflammatory cytokines and autoantibodies in their frenzied efforts to help protect us. It becomes a vicious cycle whose only recourse is to reduce the amount of stress that we suffer from!
As you've discovered, Lupus affects each of us differently. In some of us, stress may cause no direct or indirect effects. But for most of us, stress certainly affects us. Most rheumatologist wholeheartedly agree that stress is an important factor in patients with Lupus. Stress may not cause any problems for any individual patient. However, it is believed that stress not only can cause fatigue and a general lack of well-being, but it can also cause a flare up (reactivation) of our lupus. This usually means that some of the symptoms/features of the lupus, including fatigue, muscle and joint aching and stiffness, fevers, and blood test abnormalities can worsen when we are under stress.
Stress can also have indirect effects on our lupus. For example, it is known that women with systemic lupus often experience a worsening of symptoms prior to their menstrual periods. In fact, at the 2001 Annual Scientific Meeting Of The American College Of Rheumatology, it was reported, by researchers, that stress reduction improved certain aspects of lupus disease activity. As a matter of fact, based on their experience with a variety of patients, doctors who treat lupus have long accepted this concept of a relationship between stress and lupus.
"The bottom line is that stress can be unhealthy for anyone. However, stress is often, but not always, something that we can control to some extent. We certainly can learn to control portions of our reactions to stress. In persons afflicted with lupus, stress can have direct consequences, not only on their overall health, but also on their disease."

So, do not underestimate the effects of stress on an already immune-compromised system in your body (Lupus)! It can have devastating effects. I know that we cannot always control what happens to us or around us...but, we can control how we react to those things and that is where you will learn how to reduce your stress and, therefore, help your body!
With reference to feeling better.............Lupus is known for relapse/remission. That is to say that, there are periods when you feel better and your symptoms have subsided a bit (Called remission). There are also periods when your symptoms worsen (called a flare or relapse). Since the disease is replete with unpredictability, there is no way of knowing how long any one will maintain remission or how long a flare will last. We cannot predict when remission will occur or when a relapse will occur. We try to pay attention to our bodies, take our medications, make the necessary lifestyle changes and do all those things that we can to avoid a flare. Once you find treatments, changes and medications that work for you, you will become pretty good and knowing when your lupus might be going into a flare (relapse) and may be able to do things to ward it off. It is possible to maintain a resonably normal lifestyle if you are diligent about your treatments, medications and lifestyl!!
I wish you the very best and I am happy that you've joined us.
Peace and Blessings

04-05-2007, 09:28 AM
Honey, you are NOT a "victim"--you are a SURVIVOR! Welcome! We can't make our disease just go away, but we can make you feel not so alone and listen when you need to vent, not to mention MARYCAIN who is the most efficient researcher I know! Love, Kathy

04-06-2007, 08:50 AM
oops :oops: and Saysusie too!

04-08-2007, 04:38 PM

04-09-2007, 10:11 AM
I feel like a victim right now and not a survivor.
I do not feel well at all, I did go to the rheumatologist for a follow up and she took one look at me (walking stiff and in pain) and my skin, and took action. She doubled some of the pain meds, the inflammatory meds, the plaquenil, said I was in a full blown Lupus attack and that is the reason I was not feeling well. Thank goodness for pro-active MD's.
Of course, I know so little about Lupus that I didn't even know what was happening to me. I think I have a lot to learn.

04-09-2007, 10:20 AM
I am so happy that you have a doctor who knew what she was seeing and who was proactive in her treatment. I do hope that you start feeling better real soon :lol:

Peace and Blessings

04-09-2007, 01:26 PM
Hi Sweet*T!

I am so sorry that you are not feeling well :cry:, but please know that you are in my prayers and I hope that you start feeling better soon.

Keep well and God bless!

04-11-2007, 10:00 AM
Actually I am beginning to feel some better, I live n Texas and right now the weather is cool but the sun is bright. Is it the sun that we have to be careful of or the heat? Just curious, I suppose the two go hand in hand but sometimes the office gets warm in the afternoon and I feel like I fade out when I start to get warm.
With the condition of my skin right now, I know that if I got in the sun I wound turn bright RED, kinda like a lobster, not a pretty sight :lol: