I’m depressed but then you are too!


I'm depressed but then you are too!

I’m depressed, well wouldn’t you be too with the unpredictability of it all. It’s like being on a roller coaster ride and I hate roller coasters.

I came across the following transcript between Dr. Al Herzog, a psychiatrist of note who is Medical Director, Professional Programs at the Institute of Living / Harford Hospital in Hartford, Connecticut and The Lupus Foundation of America where Dr Herzog answers questions from people dealing with lupus. Some of the questions maybe just what you wanted to ask so I thought it worth sharing it here.

Dr. Herzog is a Professor of Clinical Psychiatry at the University Of Connecticut School Of Medicine. He has written on a wide variety of medical topics ranging form psychiatry to organized medicine and to the application of complexity science to the practice of medicine. He received his medical training at the University of Pennsylvania, was a resident in Internal Medicine at Hartford Hospital and received his psychiatry training at Yale. He is Board Certified in Psychiatry and is a Distinguished Fellow in the APA as well as the Society for Clinical and Experimental Hypnosis.

Moderator

The first question comes to us from Arizona. I have lupus and have been fighting depression since before I was diagnosed with lupus, which has been about 8 years.  Will the depression ever be cured or will it always be present as long as I have lupus? I have had counseling and currently am treated with medication.

Dr. Herzog
About 85% of depressions can be fully healed.  The best approach, from research, shows that psychotherapy combined with judicious pharmacotherapy will give the best results.  In your case, the depression may be unrelated to lupus.  On the other hand, it may also be a case of “silent” cerebral/brain lupus causing the depression before lupus was diagnosed — probably a rare instance.

Moderator
Our next question comes from PA. Does the presence of mood swings or forgetfulness in anyway imply central neurological?

Dr. Herzog
It could mean that, but it’s more likely an indication of an underlying depression or reaction to lupus medication(s) — esp. prednisone for mood instability. This can easily lead to forgetfulness via concentration problems.  Of course, brain lupus needs to be ruled out.

Moderator
Maryland has the next question. How can we become an advocate or emotional support for others with this disease?

Dr. Herzog
Probably the best way is to join a local chapter of the Lupus Foundation of America (http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=277&zoneid=76) and/or a support group.  Another way is to be honest about talking about your lupus. Let your coping skills be an example of how to deal with this illness in a positive way.

Moderator
Another question from Maryland. What effect do the medicines, namely prednisone, have on a lupus patient’s emotional state?

Dr. Herzog
Prednisone is obviously an important lupus medicine and does many good things. But it can also cause depression, mood instability, even manic-type symptoms or psychotic ones — so it needs to be monitored carefully for such side effects.

Moderator
Is it possible to distinguish between the fatigue and malaise of lupus and depression?

Dr. Herzog
These symptoms can be common in both cases.  For depression as the cause, one also tends to see helplessness, at times hopelessness, a sad mood, crying spells or anger, decreased appetite, sleep difficulties and poor concentration.  One way also is to try L-Carnitine — about 500 mg daily at the start and building up to that 3 times a day for lupus fatigue. If it responds, it may well be lupus caused, not depression.

Carol
My family is “tired of hearing about lupus.” They think it is just an excuse not to do everything I used to do. Where can I get some information for them so they will understand what I am dealing with?

Dr. Herzog
There are lots of resources available. I would start with the the Lupus Foundation of America’s Website http://www.lupus.org. There are probably local chapters available as well,http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=277&zoneid=76. Other sources are national sites like WebMD or Medem — and, of course, your local physician or medical society.

Moderator
North Carolina wants to know … How significant is stress as a cause of lupus?

Dr. Herzog
Stress per se probably is not a cause of lupus but certainly is associated with exacerbations of the disease. That particular aspect I have seen often.

Moderator
Virginia is asking … I try to hide my emotions a lot. How much of a negative effect does that have on my health & lupus?

Dr. Herzog
Hiding those emotions is probably common in many folks at some point. But too much definitely can be a cause of problems in terms of depression. In a simple way of looking at this, the more we “hide” feelings that go with lupus, the more we run the risk of leading ourselves to a depression.

Moderator
Another one from Virginia. What can I do to help my family member cope with her emotions? And, conversely, what should I not do?

Dr. Herzog
I am assuming here the family member is the one with lupus. In that case, encourage that member to discuss one’s feelings about having this illness, but also don’t take on the role of having to be that person’s therapist. You are better off providing a support system and let someone from outside the family help with the therapy. Sometimes a support group can also be very helpful.

dawnish
My 9 year old has SLE and is depressed and very anxious she can not do all the things her peers are doing and feels very isolated because they do not understand what she is going thru and her condition. Her school is not much help either. How can I help?

Dr. Herzog
The most important part — and it sounds like you are doing it — is to be aware of her difficulties with lupus, and her feelings. It sounds to me — from your question, that she may well benefit from some outside help as well — such as counseling, especially perhaps of the cognitive behavioral kind — maybe even some antidepressant.  I would try the psychotherapy first.

Moderator
Our next question is from Massachusetts.  From age 24 to my current age (38) I have dealt with lupus and it has taken its toll on my spirit. Are there stages/normal progressions to 14 plus years of depression? How many years can a person be depressed and what damage does this due to your body? What is “the toll” depression takes on the average body after decades of true depression?

Dr. Herzog
The issue is not so much “stages” of depression but rather degrees of it. It is important to get treatment for depression when present.  Depression touches both mind and body. For example, research shows that depressed people have more problems with heart disease and with healing from any kind of illness.

Moderator
Colorado is asking … Do people with lupus have children with emotional troubles more often than the general population?

Dr. Herzog
I don’t think we know the answer to this question. From my own clinical experience, I would say no. I am impressed time and time again by how resilient children are who have been raised in lupus homes. They are generally able to deal with the stresses rather well — but it takes honest communication with them about what is going on.

david
With respect to depression, which occurs AFTER diagnosis of lupus nephritis, in people who had not experienced such mental health symptoms before, how common do find this problem to be and what suggestions can you offer?

Dr. Herzog
Not uncommon at all.  Most people after diagnosis find initial relief — but that is often followed by a sense of “oh, what am I into now.” Or in other words, fear and a sense of loss — or feared loss — of body functions, of other losses. That sense often leads further into downright depression/sadness/helplessness.

Moderator
This comes to us from Indiana. I’m constantly feeling down, frustrated and isolated. What are some specific ways of dealing with these emotions?

Dr. Herzog
Here are some thoughts — much is a matter of attitude.  Do I see the glass half full or half empty? I need to see it half full to feel better. Since life has given me a lemon (via lupus) I need to make lemonade out of this. In other words, try to turn a true burden into a challenge. Use the support from support groups.  Often spirituality can be of a big help to many … and finally, psychotherapy.

Moderator
Another question from Indiana. Can you recommend specific subliminal tapes and techniques for dealing with stress?

Dr. Herzog
Any number of the relaxation tapes should work well, especially the mindful meditation ones out of the University of Massachusetts.  I find I get a response that is better when I can tailor the hypnotic relaxation tape for a patient that fits best with her/his imagery.

jamie
I was diagnosed with lupus 3 years ago and have handled it well. Being on different medications especially prednisone has taken its toll on my body and self esteem. I feel like I’m not the person I used to be and I’m trying to change it. But it seems like nothing is working (i.e. exercising and dieting) to build up my confidence and I’m getting so frustrated. I’ve spoken with my doctors and I still feel the same. What do you recommend because I’m not happy.

Dr. Herzog
First of all, don’t give up on exercising.  I assume from your question you are physically able to still do that. It increases endorphins – one of the body’s “natural” antidepressants in the brain. However, your question probes deeper — I get a sense about self image/body image. For that, I have found it helpful with my patients to use talk therapy and explore the less conscious elements that often get into the mix of things. At times, using CBT therapy techniques — conscious ones — also can help a lot.

Moderator
From PA.  I was just diagnosed with neuropsychiatric lupus. I have severe headaches and some anxiety. Is this because I have had lupus so long?

Dr. Herzog
It is not known — as far as I know — why someone gets cerebral/brain lupus — just as it is a mystery why lupus strikes one in certain body organs. So the length of having lupus is probably not the cause of it — but in some studies up to 25% of lupus people at one point in their life may have it affected.

Moderator
From North Carolina.  I was diagnosed with lupus 12/17/06, my first response was a sigh of relief, then I can live with this now that I know what I am dealing with, I was back to my old self, happy, optimistic person, I don’t think I am in the denial, because I wake up every morning in pain. Is this a healthy attitude? I feel good about Life still.

Dr. Herzog
Your response is probably not unusual. Why? Because finally knowing what is causing certain symptoms helps us to understand and accept it better. It is, after all, the unknown about life that causes us most of our anxieties.

marfy
To Dawnish:  maybe you could try to have your daughter’s friends over to the house for parties where the kids can do things together that your daughter can easily handle.  Music, DVDs, board games, pizza or cookie making, crafts, etc are party ideas.

Moderator
What do you do when you still experience mood swings on the maximum dose of an anti-depressant? — TX

Dr. Herzog
There is probably always more that can be done. Here are some thoughts: possibly try a mood stabilizer — all need special watching in people with lupus, but I have used them with good results, like lithium or Tegretol, etc. Also, one can try a variety of proven antidepressant augmentation meds like thyroid/Buspar.

ElyseR
My husband seems to be having a tougher time dealing with my recent diagnosis (2 months ago) than I am. More often than me, he suffers from interrupted or lack of sleep and stress. What would you recommend?

Dr. Herzog
Not surprising. We all know about men being from Mars … seriously, there is some truth in what is happening to him.  Men/husbands find it more difficult to deal with their feelings or expressing them.  They might well include the fear of what will happen to you, to the family, to their love life, etc.  I have found a joint session, which includes the husband, to be very helpful — often educationally in your doctor’s office, sometimes more in a counseling way in my office. Having both of you present is very helpful to help you both stay a team.

Moderator
How do you deal with the loss of friends and isolation due to the feelings burden of the disease by others?  Once I was diagnosed and was limited in activities and on meds I lost all of my friends.  They basically disappeared.  Family finds it necessary to discuss the different ailments I have with everyone, like they are awards, rather than help me cope. How do I deal with this? — NY

Dr. Herzog
I am sure this happens at times. The best “cure” is its prevention. I would emphasize the need for the lupus patient to talk honestly with family members — also about what is still going well and what you can still do to participate with them in family affairs. With friends, likewise speak up — make sure you make the point that you are more than a “lupus patient!”

Moderator
Does lupus, by virtue of its impact on the body, cause emotional issues such as increased anxiety?

Dr. Herzog
Yes, anxiety is a common side effect of lupus. Again, the fact of often not knowing “what will hit you next” is a common source of that anxiety.

Moderator
Colorado asks … Can lupus cause bipolar disorder?

Dr. Herzog
Lupus per se is probably only a rare cause of bipolar illness. Much more common — and I have seen it often — the stress of having lupus can bring on a bout of depression or mania if one is predisposed to that condition to begin with.

Moderator
Another one from North Carolina … My children began acting out and worrying a lot since my diagnosis. How can I help them deal with their feelings when I myself feel like my whole world has been turned upside down?

Dr. Herzog
You can help by allowing them/encouraging them to talk with you about their feelings and how they are being affected — the key here is you need to be nonjudgmental in talking with them. It is often also helpful to get an outside, “neutral” person, to help with processing these feelings in the family — for instance, via a minister, pastoral counselor, family therapist.

mandaotto
I am a newly diagnosed lupus patient. The main struggle has been arming myself with knowledge. I have no idea what to expect or how to handle what I am dealing as I have never known anyone with lupus. Up until I was diagnosed, I didn’t even know what lupus was.

Dr. Herzog
I would start at your doctor’s office and ask for literature. Lots of information is available — especially through the Lupus Foundation of America (http://www.lupus.org) and its many local chapters.  In those chapters, I would seek out a support group. It is probably the best source of fast and helpful knowledge.

Moderator
I am 43 years old I have had lupus for 23 years I have teenagers, my lupus in now going internal on me. Besides the grace of God, how can I remain in control of my life and my family? And it is true that people do not understand lupus. — GA

Dr. Herzog
I would approach this as a matter of trying to be in control as best as possible one day at a time — rather than a week or a month. Within that, try your best to stay positive, look at what is still in your control and going ok — or ok enough. And finally, explain to those in your family/friends what they can’t see about this illness that affects you and try to build a coalition with them. Yes, lots of folks still don’t understand lupus — but the LFA is trying hard and doing a good job changing that.

Moderator
My daughter who is 21 has just started having some real problems with decision making, even about huge issues that have never been a problem before. One day she knows just what she wants and the next she is adamant about NOT wanting that. Is this a lupus kind of thing? Or does she need counseling? Or meds? Her lupus symptoms are nil right now. The best she has been since diagnosis. — IL

Dr. Herzog
Indecision/indecisive behavior often is the result of underlying anxiety and sometimes depression. Even in mild forms it can cause that symptom. It might be a very good idea for her to get some counseling to help address this.

Moderator
Is depression a major problem with most patients with lupus? — CA

Dr. Herzog
Research shows us that depression is present in at least 50% of patients at some point in their life with lupus … some say that percentage is even higher. If present, make sure it gets addressed.  Help for it is very available and can make a big difference.

online
How do you deal with feeling like a bother because you call your doctors’ offices so often? It seems like something new is always cropping up, and I’m to the point where I don’t even want to call about a reaction I might be having to a new medication.

Dr. Herzog
It is important that you keep feeling important — important enough to ask the questions you need answered. Don’t let your feelings of “damaged” self esteem get in the way of speaking up and helping yourself feel more informed.  If in doubt, you can always ask for feedback about asking “too much.”

Moderator
There are days that I find I’m VERY sensitive to EVERYTHING and a little paranoid that people are mad at me just because they don’t seem over joyous when I’m around. That is so not my personality and I hate it that I feel this way. Is there anything I can do to stop this? — KY

Dr. Herzog
Make sure you are not being oversensitive to others. What you may be feeling is defensive for you and has little bearing on reality. It is often best, in such situations to ask someone you trust about how you are coming across and whether your perception fits their sense of reality. Paranoid feelings can happen with lupus. If present, often talking them out or small doses of some of the antipsychotic meds can be helpful.

Moderator
I get very depressed when I have to miss work due to lupus because I have a boss who is very critical and demanding and has not a clue of the pain of lupus. I have given him articles to read but he still creates a very hostile working place. Any suggestions? — NC

Dr. Herzog
Unfortunately, some people “just don’t get it.” Your boss may be one of them. It sounds like dealing him longer on this won’t help. You may want to get someone from HR to help you with him — or his boss if you have access to that person.

Timeless
Up to age 7, my son was a very energetic and happy kid. He has dealt with lupus since the age of 2, watching paramedics rush me to the hospital on a monthly basis. Now he is 23 and withdrawn and unhappy. As a youth it was suggested that I seek therapy for him but he was totally against it. He appears to be spiraling downhill and will not open up to anyone. His motivation and zeal for life has vanished. I am worried and desperately need suggestions on how to get through to him.

Dr. Herzog
This is not an unusual reaction by your son. Getting someone to therapy is often half the “battle.” One suggestion would be for you to offer to go with him — or a family session as a start so he will feel less singled out. Also, having him talk with his primary care MD may be very helpful as a start — or, if you have one, a minister.

Moderator
Why is anxiety so common in lupus, and why is it never mentioned as a symptom?

Dr. Herzog
Yes, anxiety — for reasons having to do especially with not knowing what is coming next with lupus — is a common symptom of lupus. I am not sure what it is not mentioned more often.  Maybe we are all trying to deny just how anxiety provoking some aspects of lupus are.

Moderator
We have time for one more question. It comes to us from Minnesota. How can one determine if the mental fog can be explained by the lupus SLE diagnosis, or is something else? And is any particular treatment known to be most helpful for this symptom?

Dr. Herzog
Mental fog, if I understand what you are asking, could be from several sources: depression itself, side effect from medications (esp. if Topomax is in your regime), and of course, brain lupus. You have to run down each of these with the people treating you to figure out which applies — and then to treat it appropriately.

Did this article answer your questions? Do you have some other questions? Let’s see if we can help each other answer them.

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About Carole

I am a fun loving woman of a certain age who believes that living with lupus is more than just about symptoms, medications and treatment. Laughter and a positive mental attitude are the essential nutrients in my daily diet and I just want to share a word or two to contribute to yours. And I am a certified Laughter Leader!

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